After months of non healing, about 3 weeks ago I got the news that my wrist bones were mostly healed but it was bitter sweet as my hand and wrist was unusable and disfigured and I was diagnosed with Reflex Sympthatic Dystrophy otherwise known as Complex Regional Pain Syndrome.
A rare and painful condition of the sympathetic nervous system.
After an injury the response of the nervous system is altered and misfires signals to the brain so pain, inflammation and other symptomatic responses are altered.
There is no cure and it often spreads to other parts of the body. My upper arm and shoulder of the same arm (right) has also been affected.
It is the most painful medical condition known, above childbirth and amputation, as it’s not a response to the injury as such but a constant misfiring of pain signals to the brain.
My wrist has muscle atrophy so I’m unable to move or rotate it but my specialist told me a couple of weeks ago to get rid of the splint, grit through the pain and bloody move it. His words. Move it or lose it.
So that’s what I’ve done, I have a great physio and I’m signed into a study that starts in just over a week. I’ve already had small but significant improvements.
I’m tackling it usual Mel style, like a dog with a bone. Stubborn, strong and determined.
It’s been hard and painful but I’m glad to know finally what’s wrong as I’ve known the whole time something wasn’t right. I didn’t suspect this as I’d never heard of it. My GP had never before me ever seen a case.
I’m on nerve blockers and strong opioids, I wasn’t happy with taking the drugs but my specialist said that this is a critical time and he was happy to prescribe whatever necessary to get me moving my wrist/hand. If left unused because of the atrophy it will become a permanent disability. So I’ve got a cabinet full of strong codeine medicine, not really ideal but I don’t have a choice.
I’m staying positive despite some pretty grim stories and possible outcomes. My physio is shocked at my progress. 3 weeks ago I could not move my wrist and before that my fingers were clawed. Before the diagnosis I stretched my fingers out every day literally constantly and I can now straighten them, they’re not pretty but they’re moving and now I can rotate my wrist slightly and I can move it to a small degree. I can now this last week pick up a glass and grip a knife.
It’s been emotionally and spiritually draining and physically very painful but I feel okay. Im going to do this, I really think I’m going to be one of the people that goes into remission long term. I feel it in my bones, no pun intended

Have you taken matters into your own hands with this diagnosis or are you just relaying on doctors. Doctors are vultures. They just want your insurance money.

I want to tell you about a dream I had once...

I was in an early 18th century gloomy gothic crowded street setting. There were hundreds of people in the streets. I was running from something but I did not know what. Then I saw it. A large German Shepard. It was running at me hard and it jumped and lunged at me snarling barking angrily. I put my hand up to block it and it clamped down hard on my upper hand thumb finger area. It would not let go. I kept talking to it and asking it to please let me go. It would not, and then I started asking for help from all the people in the steet. But they just kept walking by, and would not do anything.

The entire dream was like this. All night long. The German Shepard clamped down on my hand and would not let go.

When I woke up there were red bite marks on my hand. I took a photo with my cell phone.

melanie wrote:...
My wrist has muscle atrophy so I’m unable to move or rotate it but my specialist told me a couple of weeks ago to get rid of the splint, grit through the pain and bloody move it. His words. Move it or lose it.
So that’s what I’ve done, I have a great physio and I’m signed into a study that starts in just over a week. I’ve already had small but significant improvements.

I’m tackling it usual Mel style, like a dog with a bone. Stubborn, strong and determined.

It’s been hard and painful but I’m glad to know finally what’s wrong as I’ve known the whole time something wasn’t right. I didn’t suspect this as I’d never heard of it. My GP had never before me ever seen a case....

Mel to the other Mel...

I fractured my back, 1997, by slipping on the stairs. Pain yes...big time.

The sciatic nerve caused issues with my left foot, lost feeling etc and walked like the Hunch Back of Notre Dame. Phyiscal therapist told me almost the same but in american terms - Pick up your d--n left foot or lose it -

I did, wasn't easy. by 1999'ish I was pain free and walked without any limp and now still hike again in the Mountains.

It was strange back then to see my left leg sort of shrink - actually bent at knee with my left foot dangle unless I moved it to the left further as it could go and shuffle along. I thought if only I could find a job in a mad scientist lab would I ever be able to work again.

So keep at it. move your hand and squeeze therapy and all that don't stop...

'Thank Jesus for healing me' as you grimace thru the pain of working it out. I used to hate my PT and his work outs but I do not now.

Philip wrote:Proud of your determination, Mel - just keep on praying and pushing on through the pain. I'll pray as well. Crazy the stuff life throws at us so unexpectedly.

Oh, and how is your son doing?

Thanks Phil
He's doing really good! Healing fast and obnoxious as 16yr olds should be. He recently got his learners permit to drive. A new phase of parenting for me..... I'm scared but maintaining an illusion of control and calm lol.
God help us all

melanie wrote:...
My wrist has muscle atrophy so I’m unable to move or rotate it but my specialist told me a couple of weeks ago to get rid of the splint, grit through the pain and bloody move it. His words. Move it or lose it.
So that’s what I’ve done, I have a great physio and I’m signed into a study that starts in just over a week. I’ve already had small but significant improvements.

I’m tackling it usual Mel style, like a dog with a bone. Stubborn, strong and determined.

It’s been hard and painful but I’m glad to know finally what’s wrong as I’ve known the whole time something wasn’t right. I didn’t suspect this as I’d never heard of it. My GP had never before me ever seen a case....

Mel to the other Mel...

I fractured my back, 1997, by slipping on the stairs. Pain yes...big time.

The sciatic nerve caused issues with my left foot, lost feeling etc and walked like the Hunch Back of Notre Dame. Phyiscal therapist told me almost the same but in american terms - Pick up your d--n left foot or lose it -

I did, wasn't easy. by 1999'ish I was pain free and walked without any limp and now still hike again in the Mountains.

It was strange back then to see my left leg sort of shrink - actually bent at knee with my left foot dangle unless I moved it to the left further as it could go and shuffle along. I thought if only I could find a job in a mad scientist lab would I ever be able to work again.

So keep at it. move your hand and squeeze therapy and all that don't stop...

'Thank Jesus for healing me' as you grimace thru the pain of working it out. I used to hate my PT and his work outs but I do not now.

I will keep praying for you and put you on a prayer list too...

Blessings
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Thanks B.W, that gritty determination of a stubborn person works wonders lol. I admire your tenacity to keep preserving! I'm so pleased you worked through it!!
I was told there's no cure, possibly remission so I've been determined to be the positive outcome.
I saw a new physio today who specialises in CPRS, although he straight up said he was no expert and because the condition is so rare he's only dealt with a few cases.
But apparently I'm not usual..... I felt like that was stating the obvious lol
But my progress and testing show not the usual trend. I'm basically kicking CPRS butt.
He said today my body is healing itself in a way he hasn't seen. My progress is in his words 'unheard of'.
I'm trusting in my healing and living by the philosophy of mind, body and spirit. I'm not praying for healing but believing in a positive outcome. Because that's faith.....
It's not praying for something but truely believing it can happen. My prayer isn't to heal but being thankful for healing. Trusting in my body to heal itself and mentally embracing my gimpy hand.
It's me, it's broken like so much of me but it's beautiful.
It's not my disability but my strength, it's tested me like I've never been tested before. I've risen to the occasion and I've been a mess. But I'm not giving up, in fact I've seen a side of me I didn't know existed. I knew I was stubborn but when the pain made me want to give up I said [love you] and made a point of pushing myself regardless.
Today the physio asked me how I could stand touch to my affected limb, I told him the moment it felt painful months ago was when I desensitised it by touching it constantly. He told me most CRPS patients are paralysed by the pain of sensation of touch, he told me that my progress was unusual for this condition, he said that I should be in more pain, that typically patients are in debilitating pain but by the deformed nature of my hand and that it was extremely hairy (a misfiring of signals to the hair follicles) and my scan results as previously diagnosed I have a moderate to extreme case of CRPS. But yet I'm doing okay.
He asked me 'how are you functioning'?
By sheer grit, determination and faith.
I said from the get go I was going to take this monster by the balls and show it who's boss! I underwent extensive testing today for the mental component of CPRS in left/right determination because the side of the brain that isn't recognising the limb can be trained through imagery.
I nailed it, not only for a sufferer of CRPS but apparently I scored higher than average for the general population. My physio was stumped how I could be achieving these results with my condition. He said if not for the obvious physical manifestations of the condition he wouldn't be able to continue the diagnosis.
He told me I've got it but I'm not following any the of typical observations. Apparently I'm not usual, no great surprise there but I embrace being always a little left of centre.

Hebrews 12:2-3 Looking unto Jesus the author and finisher of our faith;who for the joy that was set before him endured the cross,despising the shame,and is set down at the right hand of the throne of God.

2nd Corinthians 4:4 In whom the god of this world hath blinded the minds of them which believe not,lest the light of this glorious gospel of Christ,who is the image of God,should shine unto them.

Great news about your son, Mel - amazing how fast youth can heal. Us older ones - we fall down and wonder how it's gonna feel in a year or two (more?). Also, sounds like you are really pushing yourself, staying positive

With my horrific illness of 25 years ago, I quickly learned some hard lessons. One is, don't listen to all of the "negative nellies" in the medical community, or even others who've either had or know of someone in your situation, as you are YOU, and so your not just some statistic or probability that dooms you to the same fate as many others with the same condition. GOD has power over all things - and He isn't limited by statistics or circumstances.

I also was sick long enough (about five years) that I realized many people falsely believe having faith to recover is merely a matter of believing hard enough that one's hoped for outcome will eventually happen. Or that if you DON'T recover, you somehow haven't had enough faith for it to come true. I eventually realized that what we must have faith in is GOD - as it is HE who has the power to facilitate and bring about our healing! And so it's NOT just a matter of having merely having adequate faith for the OUTCOME coming true, but far more so of having faith in the One who can bring about that positive outcome, Who has the power to, and having faith that it WILL happen IF HE so desires that for you. Everyone praying doesn't recover from bad stuff- many of them with immense faith in God. Some heal to a point, but with long-term consequences. Many die for things that they long prayed for deliverance from. So, we must have faith in God that He can do what we ask, and that He will IF and AS He desires it. Of course, we also must do our part in the process - have faith, persevere, push ourselves.

Last thing learned - when such things happens, we're often blind-sided, devastated, angry and frustrated. And so our reaction if typically to have a long "pity party," woe is me, and relentlessly dwell upon what we're going through. I learned to make the pity party short, get on with life, and don't relentlessly focus on our situation - stay positive, keep looking up in faith to God, and just move forward with determination. And my gosh how I began to learn how many people are suffering with things far worse than I was. In fact, I had been previously clueless as to how so many suffer - I was only 33 when I began my illness. I saw children and elderly in hospitals that were in constant agony, and it not only blew my mind, but woke me up to the reality all around us that I'd been so ignorant of!